I haven’t written in a long time. Tired and completely unsure of how to handle this place internally and in my life, I’ve floated and just worked on whatever came close to me. A whole fucking lot came close to me.
I’m ready to talk some.
PSYCHOLOGYnoun: cognitive dissonance
- the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change
Cognitive dissonance causes psychic pain or discomfort and we all experience it, even those who feel their shit don’t stink. That includes me. We all face it down at multiple times in our lives to varying degrees (mid-life crisis, turning thirty, divorces and so on) . Large scale restructuring or re-evaluating of our being due to a full on inventory of as much discord in our system is almost crippling, but if we continue through, we become deeper, stronger, calmer, fuller, more present people. Our relationships have locks fall off closed doors that can be opened some day if Providence deems it so. That doesn’t mean it will happen, but there is a relief in knowing that if it should, it could and that you won’t spend the rest of your days, no matter what, remembering only the split or rift, but the joys and beauty. Once again, their smiling faces will drift in your minds eye and you will smile, too. You will be grateful that they allowed you into their lives and you got to watch them from a front row seat. The fear that I would spend our last years together being angry or hurt by each other has dissipated to some extent. I’ve soul searched, written unsent letters (to some day be sent or read when the time is right) and I’m painting again.
You know, talking about illnesses, both mental, physical (whether hoisted upon us through experiences or just appearing from nowhere) REALLY is a risk and you DO lose people in the process. It’s not bullshit. You DO get told:
“You talk too much about your health problems”
“You complain too much.”
“You tell too much about yourself.”
“Have you tried ________________ (putting on a happy face, blue green algae, meditation … ) ?”
But then you also hear:
“Talk about it. Spoonies have a right to talk, we need to keep talking, end the shame, end the stigma.”
“Mental Health and mental illness is not something to be ashamed of. Start the conversation”
“It helps others.”
“You keep too many secrets.” (I just loved this one, it came from the same person who told me I tell too much.)
I’ve had websites for a gazillion years. This isn’t my first rodeo. “Soul Sadness” was a massive one years ago (way back in the day when I frequented the A.D.D. Support chat room in Yahoo *Holla*) There were some reputable sites who linked to it. It was an informational site about different mental illnesses, giving definitions from the (then new) DSM-IV, some support sites and some general do’s and don’t as a person with mental illness. It was advocacy. This is advocacy. The slowing down of advocacy came because I felt ineffectual in the mainstream “advocacy” arena. the people in my circle cuss, we have trouble paying our rent, many of us are on SSD, live in supportive housing or group homes, some have substance abuse problems … I’m in their midsts, I am one of them. I find, from my own personal view (and this is only my personal view) advocacy is often whitewashed, made pretty, white collar and often condescending (spoken about the patient ie: the mental health client as a problem, a burden. SMI and MI people do add to this world, not just cause a burden to all you normal, good people, who just CHOSE to be neurotypical.) I will not pander to that, speaking from reality, speaking so others who live in the shadows might come out and talk is what I do and if that’s misconstrued as narcissism. then so be it. Maturity will eventually make that discernible.
This is not to say that the children and others brought up by or involved in dealing or living with a person with a physical or mental illness doesn’t have a lot of emotions and things they feel and need to work through, but disgust is the worst thing you can convey to another human being, any human being, and THAT is what is most often given, not willingness to work through to a solved problem. “It’s their fault, their issue. I’M not the one with the PROBLEM!” I hate to break it to them, but none of us get out of this world without a shit ton of baggage. Yours just happens to be this and not sorting it out directly leads to, you got it, cognitive dissonance.
You do NOT want to add to this already large package we all own.
My package included lost memories, reliving memories from a different angle and seeing how they might not have gone as I thought they went, heartbroken over my total failures and how they harmed others non-stop throughout my life. So much more, so very much more, things that wake you up at night to cry from shame and leave you pacing as you frantically try to figure out just how you can aid in the healing of the person you harmed. Will they even let you? Is this even what harmed them, would they tell you, did this even happen? Am I just making suppositions? Then there are the things you just know because you look over your life and are able to see it. No, not see it, to KNOW it, to feel it, to experience it. It is no longer an abstract thing, it is a real, almost tangible knowledge. To suddenly know how you’ve always viewed yourself in this world and what you’ve been scrambling for all along is crippling and makes you ashamed or sad to know.
There are also some things I’m working to let myself off the hook for these days.
Realizing that I’ve lived fifty-one years with symptoms and a disease no one knew about that was the basis, or the crux of most of my problems has left me spinning with many emotions. Until you’ve been here, until you’ve spent fifty-one years thinking you were just a horrid, disgusting, gross human walking piece of fetid flesh you wouldn’t get it.
One of the tubers in my head is 10 cm by .8 cm. That’s kinda long and it hits in a few areas. The probability for my impulse issues I’ve struggled to get under control for so long, bipolar disorder, addiction, alcoholism, aphasia, working memory (the one symptom that makes people treat me like I’m five even if they are eighteen and drives me batty) is more than high. Unfortunately, most of all the patches are on my right side which is where creativity (words etc) work. My hands have becomes so shaky (except when I use certain remedies) that I’ve been forced to change my style of painting. Initially, grief and fear I would never paint again were all I felt, but now, I like the new style. It isn’t the precise, crisp, extremely detailed painting I did ten years ago, but it’s good. It takes me longer to write creatively but that also means my impulsivity is cut short. I also know there’s a fuckton less humor in my posts. Oh well. The humor comes and goes like a lot of lovers do.
Trying to tell someone to imagine one day they get a report that says they have things in their body and brain, doesn’t work to illustrate it. They can’t imagine it. They feel they can imagine it and shrug. The closest is to tell them, “Imagine one day someone tells you there are bugs and their eggs in different organs of your body and not much will be done about them except watch them.” You want to claw them out of your body. They are only inches away, you could just touch them if you tried … but you can’t. They don’t belong there, they are causing problems and severe pain. Your body doesn’t work like others, your brain doesn’t work like others. You’ve been a fuck up and the weird one, up until these diagnoses, who was dumb and made dumb decisions thinking it was right because higher order thinking was difficult in fight or flight mode. You were told you were disgusting, stupid, dizty, yelled at in work, not allowed to carry a notepad (yeah, he really did that.) I was threatened on a regular basis by someone that they would have me committed for the Bipolar ( I finally acquiesced at thirty-two or three to medication when I realized it wouldn’t break my sobriety so it was a known element) and the three kids would go to their fathers and they would make sure they never saw each other again. I didn’t know it wasn’t against the rules to have a mental illness and be a parent, especially if I went on my own. You’ve made terrible choices, both through just being an idiot and through the brain issues so you don’t know where the weight lies and where it doesn’t, is hella’ hard.
And the doctors keep finding new things they said weren’t there and you were being a hypochondriac about …
And then … and then …
Changing these core beliefs is the key to changing future decisions, the shift, the change in my belief system would only be possible by facing the cognitive dissonance head on.
This is NOT whining. This is advocacy in real time. It isn’t just about me, it is me telling my story and others telling theirs because we can’t speak for others. Their story is their own and unique to them. We, as a group, are not narcissists, babies, whiners, Debbie Downers and all the other labels placed upon us. We are fighters, we are open, we are hoping to allow others to go through the natural, organic process of feeling normal, human emotion and growth processes each person should be allowed REGARDLESS of their position in another humans life in order to cope and manage through a major life journey. Why, we as just another person, should somehow be expected to deny these steps or allowances simply because another person deems it expendable and a pain in the ass for their life is ludicrous. No one, regardless of their position in someone’s life, should be forbidden or shunned by those who love or care for them for struggling to grow through something traumatic.
The key words are ‘struggling to grow’.
Of course, one needs to protect oneself. I’m not advocating hurting yourself for the sake of others. I haven’t and never will advocate for that ridiculousness. That is both dangerous and perpetuates the cycle of hurt.
The total and complete shifting of one’s self-perception is the sharpest knife in which to carve out and away who you really are in this world. It’s painful and beautiful at the same time. It is releasing to understand, to see the other side and at the same time, learn compassion for yourself.
Do not be afraid. Who you are, what you have done (both amazing and not good) are human. Many things are not written in granite and those that are must still be acknowledged, taken in and responsibility owned. It is how we become whole and real, like the Skin Horse or the Velveteen Rabbit. It only hurts for a while. Own that it’s ok to also acknowledge your pains and wounds, too. Fuck anyone who tells you not to share if you need to share (within reason, of course. Don’t traumatize kids. I made the mistake of talking and not talking at the wrong times.)
I’m done feeling guilty about having been both chronically and acutely sick for nine years. I realized I first went to the doctor for pain nine years ago. Up until then it was migraine headaches, pneumonia, bronchitis, hives, being overly tired, things like that, not one visit for pain, spontaneous bloody noses, coffee-colored urine all at once. That’s when they found the first angiomyolipomas. The small town doctor actually said to me “This isn’t cancer so we are NOT going to pursue this Christal. Do NOT go home and Google this.” That seems to be a running theme with people. If it isn’t cancer then it’s no big deal. With no disrespect meant to cancer sufferers (I’ve cared to four, it’s a salacious disease) but there are many equally ravaging diseases. MS, ALS, TSC and so on. I will simply wave off anyone from now on who says any of these things to me or any other Spoonie.
When the time comes, and it will, for cognitive dissonance to fork your road, take the one that scares you up the mountain so you can see down to everything in the valley. it’s awe-inspiring, frightening, wondrous and a rare time in your life. From that vantage point, you can see a new path and new place to lay out your life. You will be afraid, it will hurt and it will feel lonely. it’s private and you will never be able to fully explain the amazing things that happen inside and how freeing it is but oh God, don’t lose the opportunity.
This is something I wrote way back in 2003 for someone. I want to give it to you for your walk through this journey.
There are some crosses a few of us bear
and the world refuses to see.
I can tell you’re feeling lost and alone,
your eyes told their secret to me.
You cover your pain and never let on
to the hurt that hides in your heart.
Then all you hear in your bed late at night
is the wind as it sings in the dark.
I’ve brought you a bottle hope.
Open it and go for a walk.
We all need a peaceful place sometimes
to hide when we can’t even talk.
I want to reach in and chase all the ghosts
but they’ve gone far to deep inside.
Private wounds seem to hurt the most
when they are well protected by pride.
Your fear is a great spirit,
barely hidden from sight.
It whispers and overwhelms you
telling you it’s useless to fight.
I’ve baked you a loaf of great strength.
Eat it and be filled by its love.
We all have times in this life
when we need to be fed from above.